Latest blog Painfully Aware is ready to be read online here https://www.fireflyfriends.com/uk/blog/painfully-aware/
There is a monster that lurks in the shadows, always just one step behind.
It crouches and stalks, silently preparing to strike when you least expect it. You always know it’s there, and you do everything in your power to stay two steps ahead of it.
Epilepsy is a beast that will turn everything upside down in an instant. It is a thief of peace, and it leaves fear, heartbreak, and total chaos in its wake.
November is Epilepsy Awareness Month; families like mine are painfully aware of its existence EVERY DAY. We must remain vigilant, never letting our guard down.
When your child has a stretch of seizure freedom, it is truly something joyous to be celebrated.
With the celebration always comes cautious optimism. “How long will this season of peace last?”
We’re always aware that the monster could be right around the corner, and we can’t become complacent in our efforts to keep it at bay.
My daughter’s routine has rigid rules built in that we follow strictly.
We are aware of her many triggers, and we constantly battle to keep them under control. Meds must be administered on time. Always.
She needs plenty of sleep and hydration. We stay away from crowds and try to avoid illness as best as possible.
She is nonverbal and unable to communicate to us when something is “off” or just not right, so we take her temperature frequently.
Sometimes, there is no rhyme or reason when the stalker shows up. Painfully, we’re aware that’s just part of its nature.
Every single time Epilepsy rears its ugly head, our entire family is left reeling in its aftermath.
We’d give anything to shield her from going through it; to protect her from its wrath. It has a way of traumatizing us all, each time, and it never, ever gets easier.
We desperately try to stay calm as we pray for her to break free from its grasp. Every member of our household knows their part on the team when it happens, and we work together as a cohesive unit to help our warrior girl fight through.
We have her back in this fight, and we always will
We’ll share information with others and advocate for her in November, and in every other month of the year, too. We’re painfully aware of Epilepsy and all that it brings with it.
Aware of the toll it takes. Someday, we hope a cure will exist and the monster can be defeated. In the meantime, we trudge on and continuously watch over our shoulders.
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